Not on the bike topic at all here. Did anyone see the TV programme "My childs not perfect" the other night? Amongst others, it featured a 16 year old with Tourettes Syndrome. My 15 year old son has severe Tourettes and Autistic Spectrum Disorder. The reason for my post is that it was the first programme on Tourettes I have ever seen that actually points out that only 10% of sufferers actually swear. As soon as someone hears "Tourettes" they assume they all swear. Dont know if anyone saw the first programme on Tourettes, probably 20 years ago, featuring the Scottish Guy, John Davidson? When I saw this programme I found it "hilarious". Most people find this condition very funny. Its amazing how NOT funny it is when you have to live with it 24 hours a day. I dont want to suck the life the life out of the forum with a story like this, but if people are interested in my son, Adams, story (he has been through hell over the last 2-3 years) I feel having got to know a lot of you on here, that I could put some of this into text. Its not all doom and gloom and does come with some very funny bits.
I enjoy stories of triumph over adversity, i for one would like to read it, having been through a lot mesen.
Yeah do it Steve. A plumber mate of mine suffers from Tourettes and his worse symptoms are facial Tic's. He is a top bloke with a great sense of humour and is very pragmatic about his condition. He takes great delight in the reaction of his customers when his boss explains it to them and they get that frozen 'WTF have I agreed to' look. He was doing a job at my place once when Mrs Ken got home from a bad day at work and after listening to her rant for five minutes gave her the number of his doctor saying he'd never come across such an afflicted sufferer before. Top bloke. Post it Steve.
Go for mate .. Very interested . Theres people living with illnesses and conditions all around us ( me included ) Always nice to read how people live and se the bright side
Yeah mate get it on, I used to do a lot of work with mentally and physically disabled people I can't tell you how much satisfaction it used to bring me. A friend at work's son has aspurgis syndrome(if that's how u spell it) he has some lows but has such an amazing sense of humour, just a different outlook on life!!! I fir one would find it a fascinating read fella.
Thanks for the positive feedback gents. I will probably break it down into sections, but I'm not going to make it war and peace. I am not an emotional person (just ask my Mrs!), but up until recently I have found this very hard to talk about without filling up. I feel if people understood the condition more, and realised how debilitating it can be, it would help sufferers immensely. I have had a bit of a downer on the few TV programmes that have been on about this, as obviously they are only looking to make "good telly". Show someone swearing and shouting "CHICKEN" and their work is done. I will make a start tonight!
Think it would be great mate, no direct experience myself but mrs v is a social worker who specialises in children with disabilities.... Opened my eyes to the fact that so many ordinary people live extraordinary lives living with or looking after people that Have problems that makes us take our lives for granted. And like you say, it's not all the doom and gloom people think it is, my bro in law (mrs v bro) runs a gardening / landscaping project for adults with learning difficulties who he takes out and they do proper contracts which gives them an enormous sense of self pride and contribution to society which I think is incredible. Think it's important people understand the reality of these things but also the positive side of it.
I would be very interested too, it's so great to see so many supportive messages on this forum We all know so little about these conditions, how much they effect both the sufferer and the people providing care and help around them, maybe it will help us all understand a little more and we will all be better people for it. also, Thank you for feeling that you can share this with us Sent from my iPhone using Tapatalk
would be very interested to hear about this Steve. thanks for sharing so far. I did not see the program but sounds very interesting
Good on you....my other half runs a respite centre for "special" children up to 18 years and deals with all sorts of debilitating illnesses and problems so I have dam good idea what you go through.....we watched that programme and yes it was good to see something postive rather than the predictable aspects .....funnily enough my youngest also works in a special needs school and had a breakthrough with a little boy who was a voluntary mute just like the little girl featured......
part 1. Brief history of Adam Born 1996 by caesarean section due to him being breech and inverted (facing out indtead of in). Our second child. First child is 5 years older. Adam was the model baby – never got us up at night and went to sleep when he should. Happiest child I have ever seen. People were always commenting on his constant smiling face. Karen is pregnant with our third child when Adam is just 5 months old. 1997 sees the arrival of his baby sister and they get on like a house on fire. Quite slow to develop. Didn’t walk until he was 19 months and wouldn’t even stand up. Had scans etc done. All was well; he is just a slow developer. Early years pass with Adam being a very happy child. School started. Adam finds it difficult to socialise. He does get a group of friends and all is well. He has learning difficulties and is diagnosed with Dyslexia, Dispraxia and short term memory problems. He gets “special” lessons at school to help him with this. Since birth, Adams Mum has had a feeling something is not quite right. From birth, when exited, he clenches both fists and turns both arms (like turning a screwdriver) whilst puling strange faces. Nothing unusual there, but you would have expected him to have grown out of this by the time he was 12. We move from our native Leicester to Derbyshire in 2007 with my work. Adam continues to get help at school and he is coming on in leaps and bounds with his learning – looks like he has turned a corner and all is well with the world………………. Over the next twelve months or so, we notice Adam making noises, like clearing his throat and rolling his eyes and his head and arms jerk about. This was quite minor at this time and only me and my wife noticed. The “tics” got more and more noticeable and our family commented on it when they came to visit. We took Adam to the GP just before Christmas 2009 and he referred us to a specialist. The appointment came through from the specialist for the end of April 2009 April 2009 (just before easter) – the start of it all…………. To be continued.
I would be interested to learn as much as I can so go for it. My son has the same condition as Dan, no not that condition the other one, the one that doesn't itch? I found speaking to Dan helpful.
I'm all for this one Stevebetts, along with the wife we foster children who are "special" we have met some very challenging behaviour over the years with children who are on the autistic spectrum ADHD etc, you name it we have dealt with it with some fantastic outcomes for the children. I For one know how difficult it can be and how an adult can feel when they have a child with special needs around them 24hrs a day. So Stevebetts, or anyone else for that matter, if ever you feel the need for a chat to vent off some frustration or a bit of advice if we can help You just post it up, or contact us We are all ears mate.
Part 2. The week before the school Easter holidays 2009. I get a phone call at work from the wife to say Adam is "barking" constantly. Yeah right, I say. No, he is she says. I remember this clearly. I got home from work and Adam had a puncture on his bike, so we went outside and set about fixing it. During the course of the repair, he was letting out a bark every 10 to 30 seconds. I asked him if he knew he was doing it and he said yes, but he couldn’t stop. The week running up to the holiday wasn’t a good one for him. You can imagine how the kids at school reacted to this. We spoke to the school to inform them about the new situation with Adam and asked them to keep an eye on things. The low point that week was when Adam came home in tears after one of the kids in a lesson smacked him round the head every time he barked. Needless to say i had words at school. The brutal truth is there is nothing worse than kids (some kids) in these situations. We finally had our appointment with the specialist just after the holidays. By this time Adam had multiple motor tics and vocal tics. He would punch hell out of his back and have a constant bruise on his spine about 10cm long and would stick out around 20cm. He could barely eat his food without throwing his food around and the food falling out of his mouth due to tics. Up to this point, we were strongly against him having meds because of the side effects. Now, we just wanted him to have whatever he needed to get some quality of life back. The specialist reviewed Adam and promptly diagnosed him with Tourettes syndrome. She prescribed something called clonadine and away we went. We naively thought once he started on the meds he would be back to “normal”. How wrong can you be! Over the course of the next 8 months he was reviewed and reviewed again. We tried various doses of his meds without improvement. At one point he was moved onto another drug – respiradone as clonadine wasn’t working. We had to wean him off the clonadine first to get it out of his system. This is when we found the drug was having an effect because during the week with no drugs he couldn’t even walk unaided. His tics were so strong he would end up on the floor. It took all my strength to hold him to walk down the stairs without him throwing both of us down. Tourettes is measured on the TSS – tourettes severity scale. It ranges from 0-100. 100 being the worst. Adam was classed at 92 at this point. The respiradone trial only lasted three days. He complained of very sore muscles. I phoned the specialist and she instructed us to stop immediately. A side effect of this drug is irreparable muscle damage. We had to go and get blood tests to see if this had happened – luckily all was well. Imagine having a blood test – a needle put into your arm when you violently jerk about. Adam did exceptionally well here. He found if he held his breath, he could keep still for a few minutes. Our dilemma as parents is what the hell are we doing to him, allowing him to have these drugs. The honest answer is that we don’t have a choice. To be continued...............
